Sunday, March 22, 2009

The Insoluble Problem of The Rights of People With The Most Severe Mental Illness by Anthony McCarthy

Sometime this month would have been the 37th birthday of one of my nieces, if she hadn’t died several years ago. Her death certificate didn’t state the cause of her death which was complications of severe mental illness. We don’t know what mental illness, she’d had about as many diagnoses as she had psychiatrists, psychologists and clinical social workers over a period of twenty-two years. And those are just the ones I remember.

Her life started out with such promise, she was, in many ways a very fine person. She was very talented in many things and she was very intelligent. Unfortunately, that intelligence matched with an incomprehensible maze of diseased thinking, which made any attempt at treatment even less effective. She resisted everything, she turned everything into a maze of frustrating games, guessing, dodges and deceptions. Her father abandoned her when she was quite young, my sister did everything possible in the two decades that she went from being difficult to being impossible and then on into a spiral that ultimately led to her death. Until the last months of her life just a simple change of behavior would have saved her but even that possibility entered into the spiral of manipulation. And no one was more manipulated by the madness than she was. She wanted to be well. She wanted to be able to function and have a better life.

One of the few times she improved in the last decade of her life was when she was involuntarily admitted to the state hospital. It could have been the enforced order or just the desire to get out but she came out in a lot better shape than she went in, she kept herself together for more than a year afterwards. When the engine of madness that killed her started up again the psychiatrists and psychologists and clinical social workers all seemed to be more interested in pleasing a client than they were in saving her life. She was a danger to herself, we all knew that she belonged in custodial care. I was and am convinced that the refusal of the mental health professionals she dealt with was largely due to the fashion for dumping the severely mentally ill out of the state hospital to save money. After watching her deteriorate over the following years, it was clearly not done in her best interest. She was desperately unhappy out of the hospital, she was the toy of her illness and of the people who took advantage of her diminished state. We were shocked how many people are low enough to prey on the mentally ill, we hadn’t suspected there is a class of slime that seems to look for them.

My sister and the rest of the family did what we could, she lived with four of us in those years. There were several of the 28-day clinic stays, which did no good except to run up huge bills that my sister is still paying off. I’m sure the length of those has something to do will billing insurance companies. Those never paid the full cost, even at that. Some helped more than others. The worst one provided her with models of self-destructive behavior learned from other patients and buzzwords with which to assert an independence that was illusory. The week before her 18th birthday her pediatrician, who was a friend of mine, told me that once she was legally an adult that no one would be able to help her, that the law would prevent that. That advice, given from lengthy experience with treating mentally ill children was spot on.

So she died a long, horrible and unnecessary death.

That experience, lasting two decades, leaves me very ambivalent of assertions of the “rights” of people suffering with severe mental illness. Part of that problem comes from the term being used as a blanket to cover so many different conditions. Many of those with mental illness are able to cope with life and to make sensible and rational decisions, some of them can intermittently. For those people the concept of rights to autonomy make complete sense. But for others, like my niece, the slogans become tools of the illness, the resulting madness, self-destruction and predatory exploitation of their incapacity is anything but an exercise of autonomy. My niece belonged in a very long term custodial care facility, life outside one was impossible for her. It would have been a sad life but it would not likely have been as sad as the life she had on the street and her horrific death.

Pretending that someone as sick and irrational as my niece was can exercise autonomy and make rational choices when they so clearly can’t is a denial of their most basic right, the right to be protected. The attempts to give her the language of rights was twisted by her disease and became a hurdle she couldn’t pass.

For another view, you might want to read this interview from today’s Boston Globe.

Update: Thanks to the commenters for your condolences, it's still an open sore after six years. A family doesn't get over something like this.

If you haven't experienced something like this, you really can't imagine what it's like. I've never seen a literary description of the reality that we faced, not in either fiction or non-fiction. What I said is the merest of outlines of what played out for more than twenty years. I can't tell you of the list of horrible degradations and worse that she was exposed to while she was "enjoying her liberty". I will tell you that included a period in jail, the one institution that didn't turn her away on the basis of not being covered by insurance.

Believe me when I say that we tried everything that was legally possible including just about everything mentioned in the comments.She was under some form of professional supervision just about the entire time. It became clear, as those professionals came and went, that more than a few of them dumped the case out of frustration with her worsening condition that resisted any kind of treatment. It was the most frustrating aspect of her illness that she could understand everything that was tried and it was turned and became part of the web of irrationality. This was not a mild to moderate case of mental illness. Let me remind you, it proved to be fatal.

As we had to face that fact that she was dying and up to now, we wonder if she had been put under involuntary commitment in the state hospital - where, as mentioned, she had improved - if she might not have outlived the disease or even just the worst part of it. She died quite young. It's possible that an effective treatment could have been found within her life time and she might have managed outside of an institution. With her death that possibility ended. I think she had a right to that possibility to the possibility that she might have been able to survive and to have had a life that was denied to her by those claiming to be champions of her "rights". I don't think any of us who knew her and loved her would have made that mistake. But, then, we knew her, we knew the reality of her life and her situation while they only knew her as a political abstraction. As has been said, you can't know what the reality of this kind of fatal mental illness is unless you have experienced it directly.